Forever Family: One Patient’s Journey with Down Syndrome and the Cook Children’s Impact

Kitson 1

by Heather Duge

Two days after Abbey Bell delivered her baby girl, Kitson, she turned to a Down Syndrome Facebook page for advice.

That is where she found Courtney Morey – a mom who would understand everything she was about to go through. Courtney’s daughter, Annie, also has Down Syndrome and underwent heart surgery at Cook Children’s.

“After finding out Kitson would need heart surgery, it felt like a lot,” Abbey said. “I was in shock and very worried."

Mending the Tiniest of Hearts
Kitson’s AV canal was open and would need to be repaired. The Bells are from New Mexico and Abbey wanted to find the best place for Kitson’s surgery. Abbey said she started praying and gave it all to God.

“It felt like we were battling all these unknowns and the pieces needed to come together,” Abbey said.

She ultimately felt like God was leading her to Cook Children’s. After her first interaction with the surgeon, she knew it would be the right place. The next few months focused on Kitson’s weight gain, and at five months old, she was ready for surgery.

“Passing my baby off to the medical team was the hardest thing I have ever had to do,” Abbey said.

Four hours later, Abbey and her husband saw the medical team wheeling their tiny baby through the hallway. A huge wave of relief came over them but seeing her hooked up to all the machines was hard.

“You can’t prepare yourself to see your child like that,” Abbey said. “The staff knew what it was like for us as parents and they were amazing to us.”

For the next several days, Kitson remained sedated, but Abbey said she began responding in ways that made them certain she was there.

Caring for Kitson in Special Ways
Slowly as more tubes and wires were removed, Abbey had her baby back. During the hard moments in the Cardiac Intensive Care Unit, Abbey remembers pediatric cardiologist Susan Davis, M.D. being there for her.

“I was exclusively breastfeeding Kitson, so it was hard,” Abbey said. “But Dr. Davis who has a nickname of ‘mama bear’ in the CICU came in and comforted her in all the right ways. It was the sweetest moment to see a doctor take the time to rock my baby’s bed back and forth.”

Kitson recovered ahead of schedule and moved to the stepdown unit. With the help of child life specialists, Abbey learned how to hold her post-surgery. Kitson even worked on tummy time. But on day four, Kitson developed pulmonary hypertension. She would need more time to recover.

For the next five days, Kitson’s care team worked on the right treatment plan for her lungs. Abbey said the daily interaction with the doctors was something she had never experienced. 

“It’s very rare that doctors feel more like friends,” Abbey said. “When they came into the room, we felt heard more than we ever have before. They knew Kitson not just as a patient but as a person.”

With Abbey’s husband back home to care for their other two children, she said many days felt daunting being cooped up in a hospital room and not knowing how long they would be there. But it was people like Ginger Brewer who made all the difference.

“I’m a runner and felt stuck inside,” Abbey said. “Our nurses Ginger and Madison told me I needed to go get some sunshine. When I came back in, Ginger was still holding Kitson. It meant so much to me.”

For Ginger, holding Kitson was the highlight of her day. 

“To say I was excited when I had Kitson as a patient would be an understatement,” Ginger said. “Her parents loved on her literally all day and night. So when Abbey stepped outside to take a break, I was so thrilled and encouraged her to stay away as long as she needed. I was honored to care for Kitson and her family during their journey at Cook Children's. The experience filled my heart and reinforced why I do what I do.”

Back Home and Thriving
Kitson’s lungs improved, and they made the trip back home to New Mexico. Abbey says she was worried about being home since they live in the country, but the doctors said she could contact them with any questions.

“Even though we’re back home now, they told me Kitson is a forever patient at Cook Children’s,” Abbey said. “I have contacted them several times with questions, and they have been so helpful and reassuring.”

Now eight months old, Kitson is thriving and back to her spunky self. Abbey says she is hilarious and wild – “a ball of fire.”

“Kitson is our warrior baby,” she said. “She is such a joy in life that we didn’t know we needed.”